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16 year old with Crohn's.


Mon, February 08, 2016 8:55 PM

When I was 14 I was diagnosed with Crohn's disease, and that year was the worst year of my life so far (by a long shot). For about 5 months I was in constant pain and my stomach growled obnoxiously all day long (which made going to school miserable).  The worst part about those 5 months was that I had no idea what was wrong with my stomach as I hadn't been diagnosed yet. I went through a bunch of tests: barium swallow, colonoscopy, other stuff I don't remember the name of (The barium swallow was the worst, I did that twice and it almost made me throw up both times).  At the beginning of April in 2014 I was finally diagnosed, and I was partially upset becuase I knew that Crohn's was permanent (I was hoping I just had a virus), but I was partially happy because this meant I could finally start getting some medicine that would actually help me. About 2 weeks after that, I had already taken one Remicade treatment, but I was still extremely sick.  It got worse and worse, I was still rolling around in pain all day and all night and throwing up everything I ate. That night, I went to the hospital (this was about the third time I had done that, none of the other times did anything for me), but this time I would have to stay the night.  The next morning, it turned out that the Remicade definately hadn't kicked in yet, and my small intestine was COMPLETELY CLOSED SHUT (so no food could go through).  They started giving me nutrients through a IV because I couldn't eat anything. I was out in 4 days, and I started to feel better after that stay.  That summer, I was planning on going to summer camp with my friends (as I did the years before), but this was almost interrupted when I was told I would need surgery to get rid of my scarred intestines. Luckily, the surgeon said that since my pain was easing up, I should wait until my remission is over to get the surgery.  

FPO mo19
Joined Feb 8, 2016

Sat, September 17, 2016 11:02 AM

 Reply posted for mo19.

My son was diagnosed with Crohn's disease 2 1/2 year ago.  He went from methotrexate to 6MP to Remicaide Infusions (he currently get Remicaide infustions).  He still suffers with severe flare ups and pain.  Not sure what our next step will be??  I'm trying to find a teen support group in our are (Nashville, Franklin or Brentwood) for him.  Does anyone know of one?   Thank you so much for your help.

FPO lauraerby
Joined Jan 22, 2014

Thu, September 15, 2016 7:42 PM

 Reply posted for mo19.

I'm 16 and was diagnosed with crohns when I was 10! I'm lucky that my remicade is working at the moment How are you doing now?

FPO amayansmith
Joined Sep 15, 2016

Mon, July 04, 2016 12:28 PM

 Reply posted for mo19.

Hi, I was diagnosed with UC 4 months ago and Im trying to talk to people I can relate and learn from.

FPO huesopelao
Joined Jul 4, 2016

Tue, June 14, 2016 10:03 PM

 Reply posted for mo19.

Great advice to someone just diagnosed with Crohn's or UC.  Both my son and my grandson have Crohn's and have egone through the same things you have.  My son has had it for 2 yrs now, my grandson just diagnosed a couple of months ago and he is still learning.  He still doesn't know he has to watch what he eats even with the biologic and the infusions.  I am hoping he learns quickly as it will save him lots of pain.

FPO matts grama
Joined Jun 14, 2016

Mon, February 08, 2016 8:56 PM

 Reply posted for mo19.

Continued:
Now, I am 16, and I am feeling really good.  My pains and noises have slowly gone away since I was 14 (the noises don't really bother me anymore becuase I have gained some confidence and realized it's not worth caring about yes.  When it comes to food, I have been very careful about watching what I eat (I even drank Ensure (nutrient shakes) for a while to help my stomach not have problems).  I don't eat any vegetables that aren't cooked thoroughly, I haven't had popcorn, salad, beans in 2 years. Actually, I was at Qdoba a few weeks ago and I got beans and then I felt like s*** for a few hours but then I was fine the next day (no more beans).  It is really hard to tell which foods will hurt me so I just avoid everything that might.  No seeds, no nuts, no fruit skins! (apples, peaches, pears etc.).  I avoid coffee and soda (I hate soda anyways) because I have read that those might cause harm.  I reccommend that somebody in pain go on a nutrient shake diet.  It is completely worth it.  Even if you just started having nutrient shakes for breakfast alone, super helpful, and you receive lots of the nutrients that you lose from not being able to eat lots of fruits and veggies.  
Overall,  people who are having some pain right now, keep fighting.  Stay positive, you'll get through it. 

FPO mo19
Joined Feb 8, 2016

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